A world of my own

On my walk yesterday, I passed my neighbour and we stood and chatted across the road as we hadn’t seen each other for ages, such are the times. She told me she was really missing being able to socialise and asked how I was doing. “Oh fine”, I told her. “Nothing much has changed, still live in my own little world and keep really busy with my projects, have a few friends I can chat to online when I feel like it…” Its true; (though she looked at me, as people ever do, as though I am a perplexing oddity), I’m pretty self-contained and always have been.

Last year, writing about autism was a big thing for me so I churned out many posts in quick succession, in all the excitement of discovering I am Asperger’s. Lately, not so much…and that’s partly because I was very aware that I didn’t want to turn this into a neurodiversity blog, but also because I needed a break.

I came across a video yesterday that termed this phenomenon “floodgate” syndrome, as in, when a person who is autistic finally realises they are autistic much later in life, they are so relieved, so fascinated, so longing to find out more, so eager to discover they are not all alone in the world after all but that there are others with the same kind of traits that they have felt so very isolated by all their lives, that they plunge into all the material very quickly and it can overwhelm them. Because autism isn’t just an overlay, its the fundamental wiring of a person and affects everything about them, including their identity. So to dive into it all at once is to potentially destabilise all you ever thought you were, and your entire back-story, literally overnight, requiring an awful lot of rebuilding of who you are and the world around you.

That wasn’t quite what was happening to me because I had already done so much self-development work that I knew myself pretty well when autism was realised, but I was aware that I was fixating on the topic (in that way that autistic people tend to do), which meant I was overlooking other issues that deserved my attention and also, probably, in danger of becoming an autism bore. People would ask how I was and I would immediately launch into this topic as though it was the greatest news (because it is for me) whilst watching their jaw drop (or hearing it in their voices…) that, to them, it didn’t seem like very good news at all…because, to most neurotypical people, having autism us to be “broken”, it is a problem or a handicap, not something to get all celebratory and elated about. In other words, I could tell that I was spooking some of them out with my enthusiasm!

What they don’t realise is that, to someone born with it, this is their version of normal and to come to identify and accept your own inherent traits is to “come home”, whatever that may look like to an outside observer. Its as though all the deep enthusiasm you’ve been feigning about your successes pretending to be neurotypical all your life, which by now many of us have got very good at doing (if we haven’t already burned out from the gigantean effort), is finally reclaimed and then unleashed as all this genuine enthusiasm for realising THIS is how you really are. It finally feels authentic and well-fitting, like slipping on a suit of clothing that is tailored to you when all the other ones had been slightly over-tight, twisted, scratchy and, in so many ways, deeply ill-fitting and uncomfortable.

Not to mention that, suddenly, you can make sense of all those little rejections, those times when something didn’t work out for you that everyone else seemed to be doing so well at. You can usher in all-new compassion for the younger version of yourself that tried so very hard to “normalise”, who worked twice as hard as everyone else to succeed or just get by because you were dealing with a very different set of processing (including sensory) premises to other people. A lot of it, for me, is that I have always been so much more aware than many people around me, picking up on cross-connections, sensory subtleties and much broader patterns than they ever seem to notice whereas I struggle to engage myself with what seems to hold them so rapt when I find it mundane or unstimulating (I really can’t do small talk). They seem so content with the smaller picture of what is going on and no one seems to want to take the broader view where everything is connected to everything else in such beautiful complexity. To realise that all of this is a gift, not a sign that you don’t belong or come from another planet, is quite enormous!

Another phenomenon described by the same guy from the video, who I heartily recommend (he is Paul Micallef and his channel is called Asperger’s From the Inside) is when you suddenly seem to become much more autistic in the weeks and months immediately after being diagnosed with autism (and, please note that, even in professional circles, self-diagnosis is deemed more than acceptable but to do so, you need to compare with other autistics and do some research by reading and watching as many videos as you can). All of a sudden, your nearest and dearest might start to pick up on you behaving much more overtly autistic as if you are putting on some sort of act because of this “new obsession with being autistic” that you have taken upon yourself. If they are at all convinced that you are wrong about this, they might even believe you have simply watched too many videos about it and have “put on” autism like some new identity you have decided to adopt, not unlike some parents think their teenagers have decided to be gay. In fact, the similarities are very strong because, in both cases, once a person has realised this is who they are, they are very likely to act more like whatever it is they now identify as being but this can face some serious opposition from people who knew them beforehand, who utterly refuse to believe how much they used to have to contort themselves into meeting other people’s expectations and that it wasn’t really them!

I can now look back at huge swathes of my former life and identify that wasn’t really me…and THAT wasn’t really me; but what was I doing with all those messed-up emotions and the sheer pain of suppressing who I really was? Of course, I was holding it deep inside, in a way that I am no longer prepared to do in order to make other people feel more comfortable because I am conforming to neurotypical expectations. That includes refusing to be marginalised or considered wrong or unwell somehow for preferring my own company to operating in a social pack; a belief-system that I find running as a very strong undercurrent in so many scenarios, including spiritual circles. I still flinch when it comes to having to show I am truly less enamoured at the sort of ideas I keep hearing lately, that we “really must all get together for a big celebration when this is all over…” but, unless I do, I will find myself in situations that I cope far less comfortably with than I ever did before, because I am simply not capable of pretending to be that group-operating neurotypical person with normal interests anymore (it would be like trying to squeeze an exploded airbag back into the canister when its now multiple times the size). I have told my autistic traits its safe to come out now…and its far preferable to me to avoid situations where I feel I would have to pretend otherwise than have to go along and play act that I am neurotypical ever again, at which I have no doubt I would be an abject failure, being so out of practice.

The reality is, now that you realise your autistic traits, a huge relief comes over you as you realise that you have been suppressing all these most natural traits for just so very long. For instance, they might have shown up when you were very small but then might have been deemed socially unacceptable once you got to school, such as stimming with movement or sounds or talking outloud, even though these behaviours help you to process information or remain centred. So you learned to hold yourself rigid and to keep quiet when you were five, building that kind of rigidity and control into your body thereafter (a prime source of chronic pain in later life!), in order to seem normal enough to get through education and into jobs or polite society.

That certainly happened to me; I would always make noises and rock back and forth or tap rhythmically when I was drawing pictures (and I was always drawing…) pre-school but, of course, being teased soon put-paid to that once I got into the classroom and it wasn’t until my health crashed, age nearly 40, and I suddenly found myself home-alone all day, then finally picked up a paintbrush again, that all these quirks came out one by one. Newly alone most days for the first time in years, I developed all kinds of physical “stims” and would hum or make sounds, would burst into song or frequently talk out loud to myself and, once I had got over my amusement, then realised this took me back to a happy place of old, a version of me that had been locked in a cupboard, I simply allowed it all as part of my healing process. I also noticed bizarre movements my legs liked to make when I was sat at traffic lights in my car, certain faces I pull when no one is watching (and at home, even if they are) and the big one was the foot tap, which can get incredibly fast and go on for hours but my husband never dreams of correcting it (as other people always would, by disapprovingly pointing it out or staring fixedly at it); because its just part of me, usually a sign I’m processing, which I almost always am! But, the fact is, I’m not sure I’m very suited for polite society any more, certainly not employable, after 15 years of letting all this out of the bag (and it did get a whole lot more pronounced after my diagnosis); or, I would have to try even harder to self-correct, which is why I abhor social engagements even more than I used to, if that’s possible.

I also prefer to plunge a task that interests me for hours and hours, quite blinkeredly, as in I don’t appreciate external distractions or alter pace easily between different tasks but have great stamina for focused application, and that is a skillset that is actively discouraged at school (or most jobs) until you get to the point you are deep into revision or put on a solo project. Teamwork is “the thing” everywhere you go, not to mention the prerequisite for mini social interactions every few minutes. I can’t help wondering how many people knowingly, or otherwise, on the spectrum are secretly thriving this year with the opportunity to work from home or furlough and who are dreading the return to so-called normality.

So when I read about these traits, which express completely differently in each person on the spectrum, and started to recognise them in myself, I really did soften the muscles that had been holding them all in. I also played witness much more to what came up and found it so fascinating, newly realising that the clues to my autism had been there all along (see Paul’s video on classic signs to look out for) and yes they did become more pronounced. I think, last Christmas, a few eyebrows were raised around me…as if (per the example) I was “effecting” autistic behaviours and so it felt as though I had to pull back from sharing so overtly with others for a while, so I could concentrate on coming to terms with it all myself (and, really, it was none of their business anyway; its a mistake to expect that neurotypical people will likely ever think autism is the gift that it is to you, however much you want them to love you just the way you are). Time to let the mud settle.

As it turned out, it couldn’t have been a better year in which to do it, because “lock down” conditions suit me very well, as in, the world around me becomes less pressured, I don’t have to perform in so many neurotypical arenas any more and can concentrate fully on me. Being content in my own little world is something I have always done; it was really obvious in my childhood, where I was that kid who preferred not to go out and play with the other kids but who loved to be in their room working on some project or other. In fact, I got grossly over-stimulated by birthday parties and was so grateful when they either stopped happening or I was no longer cool enough to get invited to the teenage versions. My room and then my house and, around that, my garden were my happy places and, though I had one close friend with whom I would venture on outings as I got older, I was always more than happy to come back to whatever it was I had my head wrapped around at the time but, equally, creative projects…I have always run both in tandem, to this day.

And when I get into an interest, which is often something quite niche so that the chances of finding any one else who is prepared to plunge the territory with me, though they may be politely interested for a short time (my husband deserves a medal for the hours of effort he gives to my fixations), it becomes my everything and I can apply myself for hours, days, weeks; in fact, all of life becomes part of that study, which is why I am so well-suited to metaphysics since it incorporates everything. For years, its been so bewildering to me that more people aren’t engaged with life from this grand perspective, why get so distracted by all the mundane stuff; now I know its because I’m not typical and also, within those who are diverse, there is such a vast range of fixations that chances of hitting upon those who share my area of interest are probably still fairly slim (though I have managed it, somewhat, through my blogging). So, in a sense, my expectations are better managed now than they once used to be and that has been such a boon to me. I put less energy into either longing for an interest buddy or feeling like I am on the wrong planet than I used to, and thus have truly found my comfort space deep inside my own little world, which is right back where I started.

2 thoughts on “A world of my own

  1. Thank you again! You ability to put life into words gives me such comfort. Never before have I understood myself like I do now, after hearing you for the past couple years. My spirit is soothed and I am eternally grateful to know you through this medium. Paula

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    1. Thank you! You’ve made my day Paula and am so happy we found each other. Am truly fired up once again to write more on this topic, having come at it from the inside for a few months (or years…) so there will be more, soon, I suspect. By the way, can I recommend the online magazine Spectrum Women, if you haven’t seen it already, which has some really good contributions from a diverse range of women writers on many topics (I may one day submit a piece of my own to see if they accept me).

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